Since we have started the conversation about eHealth tools in my previous blog this week, I thought it might be worthwhile to explore some of the other applications and internet based programs that may be useful to cancer patients.
As I wrote in early February, I have become (and remain) infatuated with apps that have helped me track my activity and my diet. They have made a big difference for me and others I know, and continue to keep me motivated and on target. The larger question, however, is whether we can harness electronic media to help us live healthier lives, get better control of our health, or if we have an illness or disease, become more informed and more empowered.
For some diseases-like heart disease and diabetes-there appear to be no shortage of such efforts either to prevent illness or help manage illness once it occurs. However cancer is a different animal: it is not one disease but over 200. And it is far from uniform, even within particular cancer diagnoses. We have a lot to learn about cancer, its treatment, helping care givers and improving quality of life for cancer patients among many other topics. But actually harnessing social media and the internet to help our patients remains in very early stages of development for cancer compared to some other more common and perhaps more straightforward situations such as heart disease and diabetes.
So imagine a world where a patient has access to immediate information about their disease, its treatment, the side effects of the drugs, and how they can better manage the inevitable problems that arise during the diagnosis, treatment and recovery from cancer treatment. And further imagine harnessing that information to learn more about the disease and the treatments, the patients' reactions to the drug and the illness, how to connect caregivers, and then uploading that information in a useful digest so health care professionals can spot progress or problems, and help their patients in a more effective manner than is available through a short visit to the office.
That is the type of future we should all hope for. But we are not there yet, and we have a long way to go. The American Cancer Society is proud of its electronic health media offerings, which include our web information at www.cancer.org, our Cancer Survivors Network which links survivors from across the country to help guide each other with information and support, our "WhatNext" service which matches patients with other patients who have similar situations and demographics to learn more about their illness and treatment, and validate their own experiences with their cancer, and finally (and not least) our Circle of Sharing where patients can enter their information about their illness, let friends know how they are doing, and otherwise participate in their process of care.
All of those are good and worthy efforts. But what else is available and where can you get information? And more important, what is the current status of eHealth in cancer care, especially compared to other diseases?
Some answers to both questions were recently provided by an organization called e Health Initiative, or more fondly eHI. eHI is a collaboration among committed stakeholders from industry and non-profit sectors which brings together hundreds of organizations who are interested in promoting eHealth and making it a feasible and effective part of our health care in this country. (I have a special place in my heart for eHI, since the American Cancer Society has been involved with them for a number of years and I currently serve on their Leadership Council and board of directors).
The reports I referred to above are available on their website, and include one review of currently available eHealth programs from a variety of sources around the country. The second report was commissioned by the California HealthCare Foundation to address the availability and utilization of mobile health applications by underserved populations being treated for cancer, but in fact serves as a guide to the current status of mobile health in the larger context of cancer care.
I wish I could say that the field was full of potentially helpful applications, but I can't. Not that there aren't some valuable services available. But compared to what we could be doing, we still have a long way to go when it comes to patient engagement and available tools for eHealth in cancer care.
One of the issues that many people don't understand-including the developers of these types of apps-is that the bar is a bit higher in health care than it may be in other areas of interest. If you develop an app for the general population, you can put it out there for people to use and respond to. If you do something good, the world beats a path to your door. And if you do something that people aren't impressed with (even if it is good), you are out of luck and you move on to the next project or iteration.
Health care in the electronic era has a different set of expectations than is generally the case for the internet and app worlds we live in. Physicians and researchers who use apps and programs want to know they work and don't do harm. They want to see evidence that the apps work, that they do what they claim they do, provide an improvement in some part of the health journey, and don't lead people down false paths or cause harm. In simpler words, for a health care professional to genuinely and enthusiastically recommend an app or an internet program, it has to be available, easy to use, and shown to work. Just because you build it doesn't mean that people will (or even should) come to your doorstep.
The Health IT Cancer Resource Guide from eHI is actually a compilation of materials available through the internet and apps on smartphones that may be useful in helping you manage your cancer care. There are too many programs and apps to review and comment on here, but if you go to the report you will find direct links grouped by a number of topic headings, including decision making, education, information and treatment management, social support and lifestyle management. And there is the additional option of letting eHI know if you are aware of other tools that would be useful, which in turn will allow them to build a community of reference that would be valuable for patients, families, caregivers and health professionals alike. I would add that the organization does not make any assessment on the value, functionality, or usability of the different sites, so although most of the programs and organizations are recognizable, there is an element of "caveat emptor" for some of these as well.
The other report-which is short titled "An Issue Brief on eHealth Tools for Cancer Patients" is more traditional in its analysis of the health information technology landscape for patients, especially those who are disadvantaged. While providing some background data on cancer as a disease process, it goes into more depth in examining how health information technology is applied to the care of cancer patients. Several areas are subject to focused review and comment, including telemedicine, mobile health and smartphone applications, internet-based technologies and social media.
When examining the needs of cancer patients from socially disadvantaged settings, the report cites the contributions of a variety of issues making their care more complex and difficult, including a shortage of resources available to care for these cancer patients, lack of access to care and specialty providers, the barriers raised by health literacy (a very important topic that is not widely addressed in cancer information resources), geographic impediments due to distance or other factors, and the difficulties arising from linguistic and cultural differences.
The thesis of the report is that health IT can help craft solutions that may be helpful in these populations, who are probably more "connected" than generally realized, especially through mobile phones. Using the available technologies, such as telemedicine, may make care more accessible in rural areas, while mobile health can offer interactions with health professionals that were not possible even a short number of years ago. Advances in patient care monitoring, including reporting functions, can improve communications and awareness between patients and professionals regarding their symptoms, psychological, functional and social concerns. Information about survivorship and clinical trials can also be at the fingertips of those who need to know. And support functions such as eHealth based smoking cessation programs can be invaluable (think of it as a training program for your health).
Internet-based technologies offer considerable opportunity, but as noted in the report many are proprietary and not generally available, especially to disadvantaged populations. The good news is that research demonstrates some of these programs actually work, and can enhance patient education, management, communication and psychosocial support in this population.
Social media is another area that is covered by the report, and examples are offered above and in my previous blog. But we need to understand in more depth how social media is impacting the care and outlook of patients with cancer.
The bottom line to all of this is that there are huge opportunities for progress in applying health IT to cancer care in general, and increasing patient knowledge and empowerment specifically. We are in the midst of a health care revolution, and perhaps a substantial redesign of how we deliver care. More evidence based care, more knowledgeable and engaged patients and families, more information available that is in fact accurate, helpful and useful are all hopefully going to be attributes of this new system of care.
But we are not there yet. As the eHI report concludes, "More evidence is needed to confirm the overall impact of the use of eHealth tools for cancer care." Studies are few, and impact on clinical outcomes has not been measured.
As we move forward with our new technologies-whether that will be improved therapies, fancier equipment to treat the patient or find disease early, understanding the human genome, whatever-we cannot forget that part of this technological revolution must be engaging patients and caregivers in the process. It is not only how we deliver the care that is important, but is also how we inform the care that is vital to success.
Health information technology-as pointed out by these two valuable resource reports I have discussed in this blog-offers us the possibility of creating a total system of care that meets everyone's needs. However, to be successful we will need to make the investments and garner the interest and commitment to create and develop the products that make a difference, and then be certain that they really do accomplish what they say the accomplish when it comes to improving cancer care in the United States and elsewhere.